Dear family and friends,
2016 is nearly upon us. I am finally finding a quiet moment to to reflect back upon 2015. This was a milestone year for Oscar in many ways. There were many firsts, many growing-up moments.
As many of you know Oscar went to MDA camp for the first time this summer. Five days, five nights away from his parents. And he had a blast! He stayed in a cabin with other boys ages 6-9. He had a chance to participate in many fun camp activities like Nature Club where he got to hike in the woods, observe animals, and make projects out of natural objects. He also got to swim, do arts and crafts, participate in music and drama, hang out in a wheelchair accessible tree house, and zip-line in the woods!
For those who aren’t familiar, MDA camp is run by the Muscular Dystrophy Association in many locations across the country. It is for children ages 6-17 affected by any neuromuscular condition that falls under the umbrella of the MDA. Each camper (as needed) has their own personal counselor to tend to their needs. We weren’t sure we were going to send our then six-year old to sleep away camp! But last year when we visited Oscar’s neurologist at Johns Hopkins he said, “Next year when Oscar is six he will go to MDA camp.” And we all hesitated. He then went on to explain the importance of attending MDA camp from the beginning: It is important for children to learn to rely on others for their daily needs (lifting and transfers, toileting, bathing, dressing, respiratory therapies, and much more). It is also important that kids with limited mobility have the chance to be around others like them, to be the rule instead of being the exception. His thoughtful explanation along with the countless tales we have heard over the years at the SMA conference from past MDA campers about those weeks being some of the most important of their lives convinced us that we all had to prepare to be away from one another for five days.
Oscar was extremely lucky to be paired with a counselor we had met the year before when we visited camp—and who Oscar had really hit it off with during that visit. She came to our house several times before the start of camp so she and Oscar could get to know each other better and she could learn the intricacies of his daily care needs. She happened to be a physical therapy student finishing up her doctorate—which gave us an extra level of confidence, and just by incredible chance she was scheduled to be the student shadowing Oscar’s physical therapist this past fall! We also feel so lucky that our local MDA camp is just 25 minutes from our house. We’re not sure how we would have handled it if our boy had been further away! As it were, we tossed and turned and stared at the ceiling the first night he was away. But we did make a point of going out to dinner several times and we enjoyed our time together as well.
This fall also brought many milestones to our family. At Oscar’s seven-year check-up in October we learned that he had grown three inches in a year and gained eight pounds in four months! With his sudden growth spurt we decided that he was finally ready to stay in his power chair while riding in the van, versus transferring to a car seat. This has been an exciting shift for Oscar and has also simplified things for us by reducing the number of lifts we have to do of this growing boy! Oscar also lost his first tooth this fall, and has a second wiggly one. He did not want to part with his first tooth so he wrote a very courteous letter to the tooth fairy asking if she would be willing to leave his tooth for him but still leave a treasure. And she complied! Oscar continues to participate in aqua therapy twice a week and he just loves being in the pool. This fall he worked his way up to putting his whole face in the water, and then eventually swimming underwater with no flotation device (usually he wears a neck ring floaty). He is so proud of his accomplishments and he continues to gain strength, flexibility, and bravery as he explores different ways of being in the water.
Oscar also started using biPAP (bi-level positive airway pressure—much like the CPAP people use for sleep apnea) at night this fall. This will help his breathing overnight stay more steady, and less shallow, and hopefully reduce the number of times he wakes at night! It can also serve to increase his lung capacity and improve overall respiratory function. So far it does seem to have had a positive impact on his sleep, though we are still working with the sleep center on adjusting the pressures to the optimum settings. Like with the introduction of any new medical equipment, we were both grateful that it exists and is available to us, and also feeling some trepidation about the introduction of a new intervention. Overall the transition has been pretty seamless, though, for all of us.
We had some traveling adventures this year as well. At the last minute we decided we needed to do something fun during spring break so we went overnight to Niagara Falls and stayed in a room overlooking the falls. In June we went to the SMA conference in Kansas City. As usual it was a delight to catch up with families we’ve met over the years, as well as meet new families. In August we made another last minute trip to Storm King Arts Center in the Hudson Valley. Oscar had really become enamored with the artist Andy Goldsworthy after watching a documentary on him so we thought it would be great to see one of his pieces in person, along with all the other massive and inspiring sculptures at Storm King. Indeed, it was a great hit! Also in August Oscar and David spent a weekend at Keuka Lake with friends and in September the three of us spent a long weekend at another peaceful spot along Keuka. In November we had another amazing weekend with aunt Linda and other favorite relatives in Baltimore, as well as our annual visit to the SMA specialist at Johns Hopkins. This was the first visit in which the doctor made no new recommendations at this time, which was a relief to us.
At Storm King with the sculpture Oscar calls "Red Beauty"
Storm King: Oscar with Andy Goldsworthy's Wall
David and I each made solo trips to Philadelphia this year, as well. David went for four days in the spring to have a much needed break from the day-to-day to visit my cousin and some old friends. This fall when we went to Baltimore the fellas drove home without me and I stayed an extra day in Baltimore with my aunt then took the train to Philly to have time with my cousin and to attend the National Guild for Community Arts Education conference, a very inspiring professional development experience for me.
Oscar continues to be very social guy, soaking up every moment he gets to spend with friends, all the while keeping a very busy after school schedule: aqua therapy, music therapy, massage therapy, and regular “land” PT. He enjoys school so much. He regularly answers that “everything” is his favorite and that there is nothing he doesn’t like about school! He continues to love to draw, and he has taken quite the interest in science—chemistry in particular—and quite specifically the periodic table of elements! Reading independently really set in toward the end of first grade in June, and since then he has been devouring chapter books alone, which is so exciting. We really miss reading to him, but just recently it seems he is willing again to let us read to him some of the time!
David and I each try to find time to do things we need and love: reading, writing, playing music (David), being creative in general, getting outside, walking (me), running (David), as well as finding time for ourselves as a couple. Overall we’re doing quite well.
SMA continues to pose challenges to all three of us, but we continue to find new ways to embrace these challenges, and to live life fully with open hearts. We often read or hear of people “fighting _______ (insert any number of conditions)” or “suffering from_______.” We find we do not approach our days this way, fighting or suffering. Yes, there are situations in which we advocate for better accessibility for Oscar, or work hard on Oscar’s regimen of activities for his respiratory and physical health, or research clinical care for SMA and try to educate our local health care providers on best practices for SMA. There are days we are tired, or sad, or mad, in which these feelings are somehow connected to the presence of SMA in our lives. But we continue to be filled with gratitude for all we have learned, all those we have met, the way our eyes and minds and have been opened—all because of SMA.
And of course, most of all, we are grateful for our boy Oscar, his bright smile, his thoughtfulness, his sense of humor, his creativity, and his endless curiosity about the wide world.
Wishing you and yours deep joys, unexpected delights, and good company in 2016.
Thanks for being part of our community.
Sally, David, & Oscar